How accurate is it to say that you will never forget something?
Obviously, not terribly. After all, “never” and “always”, being infinite, are not generally applicable on a human timescale. And, even if we assume that forgetting can only occur by the act of a living person, the nature of human memory over extended time periods makes “never forgetting” a rather unfulfillable promise.
This week represented a fascinating, if bittersweet, milestone for me. As of this Wednesday, I have been disabled for a majority of my life. The dramatic saga of my diagnosis was one such event which I have committed to “never forgetting”, even though I know that this task is impossible. In some respects, I feel as though I have already failed at this task. Promises made to me and to myself about not letting this label define me or limit my grand endeavors have proven impossible.
They tell you, when you’re dealing with a disability or a chronic disease, that you can’t let it define you or limit your options; that meeting a certain medical or legal definition doesn’t make you any different from your peers. While the thought is nice, I have increasingly found that mindset to be idealistic and impractical. Having your options limited is pretty much the definition of disability, and accepting that isn’t pessimism, it’s being realistic.
Whenever I take an unmodified psychiatric assessment, it always flags me for possible risk of depression and/or anxiety, with a healthy dash of obsessive-compulsive and paranoid symptoms. This is because I answer honestly on questions like “I feel different from my peers” and “I am sick a lot”. The fact of the matter is that I am objectively different from my peers because my body does not function within normal parameters, and I am sick a lot for the same reasons. Devoid of context, these statements might indicate a problem. Upon explaining that, yes, I do experience great everyday stress, because I have to cope with artificially supplementing missing organ function, most doctors agree that my apparent pessimism is completely justified, and in fact, represents a mostly-healthy means of coping with my present situation. After all, it’s not paranoia if your statistical chances of dying are vastly increased.
As for the issue of defining myself, it is my experience that people generally define themselves by the struggles they encounter and how they meet them. For example: if a person’s lifelong struggle is to climb Everest, I do not see why they should not describe themselves as a climber. For my part, my greatest struggle by far is staying alive and keeping my body from annihilating itself. This may seem relatively simple as a life struggle to the perfectly healthy and the uneducated, in the same way that climbing an oversize hill may seem like a simplistic goal for someone unacquainted with proper mountains.
To me at least, having someone tell me I can’t let my illness define me tells me that person has never really had to deal with serious health problems. Because taking proper care of oneself is a defining struggle. I am proud of the fact that I have managed to keep my body alive despite several key systems giving up on me. I am proud that I have managed to keep myself in a state that I can actually participate in life, even if my participation might be different from others’.
And yes, I understand that what is meant is that I ought not let my issues engulf the entirety of my existence- that I ought to still have non-health goals. But trying to plan goals completely independently of my health is setting myself up for failure. No matter how hard I try, no matter how much I will it to be so, I cannot change my basic physiological requirements. At best, I can try to make my personal and health goals work in harmony, but this does require me to let my disability set the boundaries of what challenges I undertake.
Yes, I can still run a marathon. But I couldn’t step outside and do it today. Not only would I fail, but if I persisted against medical advice, I might even die trying. Dealing with my health means I have to plan and make compromises. I can’t be completely single-minded about these kinds of goals because my health requires constant focus. Lying to myself, or having others lie to me, doesn’t help, and only increases the chance that I’ll feel worse about my situation. Accepting this, in effect, letting my disability define my boundaries and dictate my life, is the only way I will ever be able to move beyond it and start accomplishing other goals.
